AUGUST 2015 SURGERY SISTERS!!

Glad to read that you are all doing well.Drains are annoying whatever is going on with them. If nothing is coming out, there may be an obstruction. I had this happen and they had me push them in deeper and milk the tubing. It worked like a charm and didn't even hurt. Mine leaked a bit too but again they had me push them deeper. I guess I was too active and kept pulling them out too far. BTW...I've had drains twice and it didn't hurr either time they took them out. I was scared cause everyone said it was terrible but I didn't feel it at all!

Amy, how awful for you. I hope you feel better soon. I agree getting the drain out didn't hurt and was a relief for me.

This rrecovery keeps getting better (NOT). So tonight I'm taking a bath and I notice a bad old friend...spots all over my arms and legs. With me that means one thing: Sweet's syndrome. If you've never heard of it, don't worry, my oncologist hadn't either until I was diagnosed. Only 1 in a million people get it, and only 25% of those have recurrent Sweet's. Lucky In a few words it is a immune disease that causes boil like lesions and high fevers for 3-7 days. It has to do with high nutrophil numbers and is often discovered the first time in the early stages of breast cancer.

Anyway, it always stinks, but it's worse than usual this time because a) it causes high fever b) causes difficulty breathing and mostly because c) antibiotics from my lung stuff will make it worse And its treated with steroids which will make any infection worse. Plus I don't really have a Sweet Syndrome Doctor yet because they scheduled me w a dermatologist but not until November! So tomorrow I have to figure out who to call to talk about it... Probably my oncologist because they at least know what it is but I have NO idea what they are going to do! Sigh again...lol

Sorry to hear justamy. I pray it gets better for you. Sorry I've been a bit MIA. While my own sx seems to have gone well according to my ps yesterday at my po, my bff Anna who is also a help with me got confirmation yesterday that her sister indeed has metastatic cancer that started in the pancreas and has spread to her liver where there is a large mass there. I almost hate telling her my news as it's like nothing compared to her sis who is in constant pain and the clock is ticking for sure as it goes with pancreatic cancer. So between my resting and trying to be an ear and help her research it, I've been mia. Her sis while 62 is mentally challenged to where her capacity is of like elementary school child. Simply heartbreaking.

Anyway, good luck to you sis's this week on deck. While discomfort and the 4 drains are a pain in the butt to deal, it isn't as bad as I thought. PS has me seeing him once a week so next appt is Mon. I see bs for po on Fri then it goes for 6 mo as long as nothing comes up for him to recheck. I think I'm more worried about the se of chemo and tamoxifen. I see MO 9/23 again to figure tx plan.

Bro leaves early evening today. Been here from LA since last Wed. Poor guy has done a lot. May not look like it but wow, the little things like bring me a cup of water can be huge at times. He's very queezy about body fluids. So we went from before him coming here no way can he deal with that to at times being in the bathroom stripping the tubes. He's ran a lot of errands for me, washed my car and waxed inside of it. Looks brand new after months of neglect. Going to miss him. He's spent though. While he sleeps 9 hour nights, stress has him looking like he slept 0. Feel bad for him. He's sticking around till 8 pm tonight not cuz I have stuff yet to have done but Anna is coming over after work and would like to see him one more time before he heads back to LA. Who knows when he'll be back up to see me because since this is such a secret with the fam, he has to be careful with mom and dad. Mom's easy as she's in Seattle but he sees dad every weekend and it can be weird if he skips one. So this past weekend it was a friend of his from out of state came and he's busy with him in LA catching up. Otherwise if it wasn't sneaky and especially if dad knew, he'd stay all he wants cuz dad would cover the pricey car rental beyond the week he has it for. That expires at 5:30 am tomorrow so hence the leave at 8:00 pm and get there before 5:30 am to get it in on the dot.

Anna has done a lot for me over the years. Bro loves her too for it and she's a great person. Wacky family with crazy mom and all unfortunately. So there are 2 of us for me and bro in terms of emotional and mental support for her too.

If anyone happens to know a site like this for pancreatic cancer, please let me know. I have never seen such a thorough informative and supportive site like this one is. Wow. God bless whoever started this one.

Again, good luck to everyone having sx coming up. I'm thankful I read this site for 2 months and was very prepared. I did suffer and I think do still from constipation from Norco and none of the otc stuff worked. What worked for me was a handful of prunes and then I had the D problem for awhile. lol. I think I'll need to do the manual flush with prunes so to speak until I'm done with Norco, which will be when the bottle is empty and I'm afraid to not take it and wind up in pain. Thankfully no pain per se for a couple days now but the tightness and discomfort and swelling is nuts!

God bless you all, with much love.

Take all the Norco you can! I thought I was tough after my BMX because I'd had 5 other surgeries and always skipped narcotic pain meds. I hate the way they make me feel. I learned with BMX, I hate pain way worse! Once you let it get out its really hard to reign back in. I even got my doc to refill mine because I was still in terrible pain after the first round. I felt like a wimp but I wasn't hurting! I think I was on Norco for a month. I didn't get addicted... Once the pain was over I didn't want it. Moral of the story...make the docs work for you and keep your pain under control even if it means asking for more meds. Good luck with your pain control!

Morning all - quick checking in just to wish everyone good luck over the next couple of days.

JustAmy - sorry to hear about Sweet's. I've actually heard about it, but didn't know anything about it - I hope the fever stage is limited, and you're able to control it. Sending all my good vibes your way for that!

As for me - I've been going through a panic stage that I'm choosing the wrong surgery. I've been reading more and more about a gene mutation that I do have (MTHFR) and how there is a possible link with BC, and now I'm worried (even more than I already was). I just keep telling myself that science will always discover new things, and in a few more years, we will have new information and maybe I will or will not have chosen the "right" surgery. I have to keep telling myself it's the right surgery for right now.

That, and I'm already stressing about the pathology report. Which is silly, I know, but I am.

Anyway - thoughts and prayers out to those scheduled this week.

Hello Ladies, had a bit problem with my drains this morning. Woke up to shirt wet and fluid around where the drains come out. Drain bulbs full or air. Called my surgeon's office and she was at hospital. Told me to come to the hospital and got more stitching around the drains. Feels a lot better.

Justamy I hope things will get better soon.

shorfi and Scotland good luck tomorrow.

Bjcallwell it is hard desion to make and even walking it to the hospital on Friday I was thinking was this the right choice. I am very glad I did it though. I will be nervous until I get the path report in a couple of weeks.

Arista so sorry to hear about your friend.

Hugs to all, Take good care of yourselves.

Amy, hope you feel better soon.

Good luck tomorrow shorfi and Scotland.

Bjcalwell, I struggled with my decision but once I decided on BMX it was like all the weight was lifted. I had cancer in left and path showed cancer in right was not far behind.

I went for PST today. All is well, except the nurse couldn't draw blood so she sent me up to the lab. Nurse in lab had no problem but I developed a huge lump on my forearm crease (what is that body part called) while driving to work. Turns out I got a hematoma from the blood draw. Bruising is growing hourly, it hurts to bend and straighten my arm. I'm icing now, then warm compress, on and off for 24 hours. I need this like a hole in the head. Worried about lymphodemia. Grrrrrrr.

great to hear Suzy!

Wondering if you ladies can tell me about sleeping elevated after surgery. Is there a medical reason that this is done? I do not have a recliner nor do I feel comfortable sleeping that far away from my husband those first few nights - I also really dont want to pay for a foam wedge (cant even find them) if I dont have to, they are not cheap! Any info would be appreciated

All the best to those with surgeries this week!

Kim

The recliner was a personal choice for comfort - I was afraid of laying flat and I'm a side sleeper, so, I needed it for positioning.  I was also worried that my husband would not rest well with me there, because he'd be worried about bumping me during the night.  My 19 year old daughter has insisted on sleeping beside me on the couch (she also stayed overnight in the hospital) just in case I needed her .  I am planning to try the bed as soon as the drains are out. Which might be tomorrow as my levels are now well below 25ml YAY!!.

Whatever makes you the most comfortable is what will work best for you!

I have just been quietly observing these posts, and making notes, lists, and getting things ready for my own BMX with TE on the 28th. I've been nervous, of course, but you ladies are giving me much more confidence. I got my paperwork back from the insurance company and I got approved for a 2 night stay, which I am happy for because I'll be travelling from out of town and I want to know that everything is ok before I hit the road.

My brother has a business that sells tempurpedic beds, and we got one a few years ago with the base that elevates so I know that will be very helpful. My husband said he will sleep in a room down the hall while I am elevated. He has been wonderful through chemo - so I have no doubt he will be extremely helpful during the sx recovery.

I have a question though - how soon before I'm able to drive? We live a little way out in the country and I don't like the idea of being house bound. My husband will have to go to work some during the days and so will most people around. My kids are both grown and live out of town - unfortunately, they won't be able to be here either.

I know it will all be ok...just things I've been thinking about. Thanks everyone!

That whole arm, blood pressure/draw thing is so interesting. I totally err on the side of caution and use my left arm now but my BS has told me over and over again that it's fine for me to use my right arm. I had 3 nodes removed on the right side but according to him, it is dependent on how many nodes they remove. Hmmmm...ok, but what's the magic number there? I will probably never offer up my right arm again. For those heading into surgery, I was reading about the lying positions and seriously, I LIVED in my recliner for four solid weeks. It hurt to try and lie flat and it wasn't as comfortable in bed with pillows propped up (for me) as it was on the recliner and then there was nobody to accidentally bump me in the middle of the night. After BMX it did help to have some small pillows to prop up my arms, especially my right arm (I stole one of my son's small pillow pets which worked great). I wasn't driving for about 4 weeks past BMX - the most difficult thing was putting on my seatbelt!! That seatbelt STILL gives me grief and is uncomfortable.

There is a lumpectomy clinic at the hospital I was at. Had to attend the class in addition to the 1:1 with the nurse navigator class. You DO NOT want to risk getting it. They gave us rubber bracelets that says the no bp, needles, IV on affected arm to use forever. Saw 2 ladies in the class with an arm so swollen and them in misery with the arm sleeve on. One doesn't have insurance to cover a lumpectomy therapist. Women's clinic gave the sleeve for free to me if I ever start to swell and for use every time I fly or go to high altitude at my preop.

There is no rhyme or reason about # of nodes taken out as to whether you'll get it or not. One thing's for sure, you get it and you have it for life. It's not regular swelling where you elevate and it goes down. And it is painful for them. Some folks have 1 taken out and get it, some had 20 out and don't get it. It's a lifetime caution. One lady forgot about this and 20 years later got it. You can see from afar the difference in the arms. There is no guarantee that you won't get it even if you do abide by the rules, but why chance it?? I wear that bracelet even when at home. Should something happen I go unconscious and can't speak for myself, I don't want to wake up and see an IV and all on my left arm.

In the hospital even though 4 nodes were taken from my left side, they did bp on my leg. I love this place. They cover us fully with whatever we can do prophalactedly.

The reason why you can't really tell just from # is we are all born with different # of nodes. If you aren't born with many under your arm to begin with then 1 can be a big deal like 20 out would be to someone who has the max.

The lymph system is very interesting. Got a binder on it. It's not something that's on our radar when we talk human physiology but it's very important for toxins are primarily taken to the kidneys for processing via this system, not blood system. People with lymphedema are therefore possibly more immune compromised because there aren't enough nodes to do the filtering like there was before, and can be prone to infections.

I didn't think it was a huge deal after reading about it online but this class woke me up that it can be. My ps is part of this wonderful women's clinic group and says unless you had 0 taken out, don't chance it.